Miguel Leal, MD, says the key is to start from Day 1

Start the dialogue on cardiac implantable device shutoff from day one, whether decades away or not, says Miguel Leal, MD, an electrophysiologist at the University of Wisconsin School of Medicine and Public Health in Madison.

Part of that is discussing the options for reprogramming well before end-of-life care is needed, he explains in this exclusive video interview.

"Nobody likes to talk about death," he says. But, "it is possible to have an open and honest conversation from the very first day without necessarily bringing the patient's spirits down. Rather it should give the patient the notion that they have the care of their physician as a partnership not just when things are going well ... but also when the purpose of the device may no longer be there and they can actively participate in their care."

A transcript of his comments follows:

Cardiac implantable electronic devices, like pacemakers and defibrillators, they have been used for several decades, and the decision to implant them is relatively straightforward. It comes from clinical practice guidelines that have been established for many years now. The decision to interrupt therapies or to downplay therapies when end-of-life care approaches is a much more complicated one. In order to shed some light into that discussion, professional societies have tried to come up with consensus statements that serve as guidelines to physicians, patients and families, and try to shed some light into how exactly should the process take place.

One of the strategies that, in our experience, has really helped facilitate that conversation is starting the dialogue from Day 1. The day you decide to proceed with a pacemaker implant or defibrillator implant, and the patient is in agreement with that decision, then an informed consent form is signed and the conversation takes place in the clinical setting, is the ideal scenario to start the dialogue. That's the one day that you want to start asking the patient and the family questions that have to do with what will their expectations be when the end-of-life plan of care approaches, which for some patients might be months away, and for others it might be several decades away.

Because if they've have never had an honest opportunity to discuss that topic when they are feeling relatively well, you certainly don't want to save that discussion for a circumstance when they could be acutely ill or gravely ill and their families are completely overwhelmed and not able to understand what you're proposing and to make the right decision.

So, devices have several opportunities for programming these days. They're very complex, and you don't have to use a recipe or a cookie-cutter approach to patients. In fact, you can customize and tailor the programming of a pacemaker or defibrillator to an individual patient's needs. This can also be disclosed to patients and should be disclosed in a way that they understand they're partners in their care. They're not just receiving a device implanted by an electrophysiologist because of a specific medical need, but they are actually understanding how that device is programmed, what's enabled, what's not enabled, and how the programming of that device can be changed and altered over their lifetime. As they approach the end-of-life care stages, as they approach a situation where quality of life is what truly matters, as opposed to simply quantity of life, they should be already aware from the former conversations they had with their providers that their device can be reprogrammed and once again customized and tailored to what their new needs happen to be.

It's a discussion that is surrounded by a certain aspect of taboo. Nobody likes to talk about death. There are very few people who are open-minded enough to talk about death freely. This is something that is not just true for patients and families, but also medical providers and their staff. And we're trying to, through consensus documents such as the one the Heart Rhythm Society published several years ago, get everybody the understanding that it is possible to have an honest and open conversation from the very first day, without necessarily bringing the patient's spirits down. Rather, it should do the opposite. It should give the patient the notion that they have the care of their physician as a partnership not only when everything is going well and the device implant is proposed, but also when the purpose of that device may no longer be there and they can actively participate in their care.

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